Survivors SPEAK OUT! . . . . . William
SPEAK OUT! – William
Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email (optional)
Eastern Tennessee, USA
3. When did you have your ABI? At what age?
4. How did your ABI occur?
I was subjected to 334 ppm (parts per million) of carbon monoxide for six days.
5. When did you (or someone) first realize you had a problem?
At 6:00 am on the seventh day, I was found unconscious outside my apartment door.
6. What kind of emergency treatment, if any, did you have?
A hyperbaric chamber was used on three occasions while I was in a coma.
7. Were you in a coma? If so, how long?
I was in a coma 32 days.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I had physical and speech therapies for two years – first, inpatient; then outpatient.
9. What problems or disabilities, if any, resulted from your ABI (e.g., balance, perception, personality, etc.)?
Pre-injury, I was a retired Marine Colonel on discharge leave. After my injury, I developed a pronounced hyperkinetic motion disorder, with severe spasticity, a short-term memory disorder, and slow-awakening problems. I cannot walk, type, write, or do anything requiring either fine-motor control or large muscle use.
10. How has your life changed? Is it better? Is it worse?
I went from an active Marine to an inactive thinker. From one perspective, my life got significantly worse – about the worst it could. In another perspective, it became rather better. I have a better logical process; I am more understanding of others; and I have the dubious privilege to be unable to use any pharmaceutical drug. To combat this odd aspect of my disability, I studied to be an herbalist, and I live quite well. I cannot have many food chemicals, so I eat better too.
11. What do you miss the most from your pre-ABI life?
I miss being a Marine Corps Colonel.
What do you enjoy most in your post-ABI life?
12. I enjoy knowing how to help people who cannot yet cope with their disability. I help anyone who asks.
13. What do you like least about your ABI?
My brain injury turned me into a burden on everyone in my circle. I can do very little. Whenever I try to use my muscles, hyperkinesia starts up, followed by severe spasticity. It makes doing most things impossible.
14. Has anything helped you to accept your ABI?
I eventually realized that this was what I had left in my life. I could either mope about lost opportunity, or I could grasp any opportunity that came my way. I chose the latter – I cannot change anything, so I willingly accept it.
15. Has your injury affected your home life and relationships and, if so, how?
My life has been affected in every conceivable way. Everything is different. Relationships are far harder – people do not wish to know the twitching cripple in the fancy wheelchair. Physical relationships are completely different – I cannot be an active partner, so I must be passive. It takes a special person to be able to cope with that.
16. Has your social life been altered or changed and, if so, how?
Able-bodied people do not like to see severely disabled people. It embarrasses them. This makes socializing rather difficult. People will say “Call me” and give me the wrong number. Or, they will shudder at the thought of seeing me again. In stores, I am apparently invisible.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
Caregivers come and go. Some are good; some are perverts; some are thieves. They are necessary, so I lose things, get humiliated, or get assaulted. I have a friend who takes time to look after me once or twice a month. My friend works away and is home infrequently.
18. What are your future plans? What do you expect/hope to be doing ten years from now?
It would be nice to still be breathing. I have lived as I do now for twenty years. I hope to live for longer.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other ABI survivors with your specific kind of ABI.
Accept it as it develops. It takes time to reach the level you will live at. Accept that, and it will be easier.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
It is easy to be angry at the condition you find yourself in. You were not supposed to get disabled in any way, and you probably think that it is horrifically unfair. That is completely true in every case, but it does not help you go on with living. To do that, you have to look at what you have been given, what you still have, and what you can do. Take that inventory slowly and carefully because it is important. When you know what you have to work with and what you can do, don’t try getting anything else. Just accept what you have and adapt to live at that level. When you have done that and you can live calmly at that level, you could try to do more, but not until you are calm with your disability. So many people spend all of their time trying to fight the un-fightable. They are constantly miserable because it does not seem fair. I know it isn’t. I lost nearly everything three months after I retired from the Marines. All my dreams, hopes, and expectations died along with some of my brain. I really do not need to make worse what I have left by being miserable about it. That is foolish. I have to go on living. I had, and still have, no alternative, so I must make the very best of what I have. You will enjoy a better standard of living if you do the same.
Thank you, William, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
(Clip Art compliments of Bing.)